Onemorestep

Keppra Trial

29 posts in this topic

I decided to give keppra a shot. Too many miracle success stories for me to ignore! I also felt huge relief from oxiracetam and coluracetam (before I started having speech problems and quit cold turkey... HUGE mistake. Should have tapered. Still recovering from that a year later) and am hoping this racetam will be the golden ticket. I know it probably won't but that me mindset was the only way I could get myself to try it xD

I am starting out with a test dose of 5mg to make sure I don't have an abnormal drug reaction as I am sensitive to all chemicals.

Little history:

I've suffered several TBI's over the years and suffered from chronic anxiety and depression for years. I had several HPPD symptoms pre drug use that I didn't realize weren't normal until my onset years later (light wiggling of lines where walls meet ceilings, DR, PTSD like anxiety)

Had my first bout of HPPD from DXM use when I was 20. I started to have horrible nightmares and couldn't sleep for more than 5 hours at a time. Horrible anxiety. Stress. Etc. didn't know it was a HPPD symptom then though. Recovered naturally over the course of probably 6-8 months but still had reaccuring panic attacks from time to time.

At the age of 21 (fall 2011) I started smoking pot chronically. I mean I jumped RIGHT in. Morning noon and night. I found my true love! It seemed to cure me of my social anxiety and what I now know is fibromyalgia/spastic hypertonia.

I stated experimenting with mushrooms a year later. Once in the fall of 2012 and then a LARGE amount of mushroom use in the spring and one LSD trip which triggered the majority of my symptoms. I partially healed mentally but still had DP/DR, static, morphing of objects, anxiety, depression.

One year ago all my symptoms were drastically worsened through abrupt cessation of oxiracetam and coluracetam. Now I feel suicidal on the regular, have extreme brain fog, dp/dr and anxiety.

I use no drugs. I do not drink.

Supplements

Magnesium

Sporadic gabapentin (300mg)

Methyl folate

B complex

Valerian root (just finished withdrawals, that was a bitch)

Last few weeks I tried very low dose uridine. Didn't seem to help

Tried small doses of 7,8 dihydroxyflavone (1/10th normal doses). Worked a bit. Caused constipation that lasted weeks and a heavy withdrawal day.

Haven't taken benzos in a two months.

Probiotics

Thiamin cocarboxylase

It has been an hour and I don't feel very different. My legs feel heavy when I walk however. Strange. Looks like I didn't die so that's good! I will continue to experiment with increases dosages and keep reporting. Keep those fingered crossed for me!

Much love

0

Share this post


Link to post
Share on other sites

Took 15 mg a few hours later. Still no changes good or bad.

Just took 30mg raising my total dose to 50mg for today. Going to chill on that and see how I feel tomorrow.

Actually had a not too terrible day today! I honestly think it's the thiamine cocarboxylase though that stuff is magic for mood.

Will probably take the full 50mg at once in the morning when I get up and maybe another 25-50 in the evening depending on how I feel. I hope to tite ate up until I see a change whether it be bad or good. Even if I feel nothing at all I'll stick with the regimen for 6 months or so and see where I'm at. Excited to see where this goes!

0

Share this post


Link to post
Share on other sites

Also 0 side affects so far. Heavy legs earlier was either placebo or the magnesium I took to quell some anxiety about starting the new med.

0

Share this post


Link to post
Share on other sites

Woke up feeling pretty bad. Irritated and groggy. Slept a lot more than usual.

 

Took B complex with lots of b6. Not sure if it helped.

 

Depression is worse than yesterday and so is anhedonia.

 

Cant say all those are from the Keppra but i do believe it is making me feel worse than i normally would.

 

Had a strange emotional flashback that was just awful. Waking nightmare feeling.

 

Only took 25mg this morning. Maybe will take another 25 tonight. I do not think i can go above 50mg until some of the lethargy and bad ju ju fades. 

 

Shame.... yesterday was a great day for mood and energy.

0

Share this post


Link to post
Share on other sites

The depression lifted at about 6:30 and I felt pretty good.... It's been all uphill since then!!!!

Man. I'm starting to feel emotions that I haven't in so so soooo long. I have urged to DO things. I find myself actually excited for events in my future. For someone who's suffered from intense anhedonia for over a year this feel downright amazing. And I'm only taking 80mg a day right now!

No change in visual symptoms (snow, after images, shifting objects)

Side effects, occasional sleepiness and loose stools. Periodic decreases in reading speed. Possible decrease in libido/sexual function but I got supplements and a butt load of Indian cialis to take care of that ;)

Am going to up the dose again to 110 or a bit more. Excited to see where this takes me.

0

Share this post


Link to post
Share on other sites

Things are going pretty well except for one big exception: I cannot sleep. I've noticed it getting worse and worse and last night I feel like I barely slept at all.

This is starting to feel eerily like when I was on Baclofen for 9 months a year ago. Started off sleepy then led to insomnia and slightly manic feelings. That unfortunately ended in some extreme cholinergic dominance (certain GABA agonists can cause this). I really hope this isn't like that and it poops out after 9 months and I'm left emotionally crippled.

Has anyone else here had insomnia with keppra? Any tips?

0

Share this post


Link to post
Share on other sites

Didn't feel much of that keppra Magic I had been experiencing the last few days (increased urges to do things, excitement, feeling normal love and affection). Was fairly cranky but idk if it's keppra a MOA or just sleep deprivation.

Sitting in bed wondering if I'm going to get any sleep tonight. This is brutal and I'm only taking 100mg a day.

I'm no longer suicidal/feeling doomed but I do feel flat and I can't sleep. Slightly sociopathic maybe. Idk. This drug is strange.

0

Share this post


Link to post
Share on other sites

Having good days and bad days and good moments and bad moments. Haven't had any extreme doom/crying spells that I was getting before. I am much more social. I laugh more! These things are good.

The bad though.... Such bad insomnia. I think the majority of my negative side effects are just from lack of sleep. I'm BEAT. I'm inly taking 50mg and it feels like I'm on a shit ton of caffeine.

Tempted to try trazadone again but the 5ht2a antagonism scares me. I've taken it for long periods of my life but not since I got fucked by piracetam and entered HPPD stage 2. I am much more sensitive to drugs now. Sigh.

0

Share this post


Link to post
Share on other sites

The dp lessons I'd say about 70 percent the first 4 days and then more like 40 until today. Can't say much about DR. Anxiety has been lessened somewhat but more strides on the depression front. I've been on family property in Michigan the last few days having a blast up until last night where I suddenly became very tired in the evening and had my usual pre-keppra nightmares.

A little worried. The insomnia has started to fade but so has the anti depressive effects it seems. Today was the first day since I started keppra I JD a suicidal thought. I'm bumping it up to 90mg. If the insomnia stays away I can continue going up but I fear this is going to be a temporary bandaid I'll grow tolerance to. Just have to wait and see I guess.

0

Share this post


Link to post
Share on other sites

Well I took 500mg today. Can't replicate the reaction from before. What a shame. I mean for ten days I didn't feel doom. I didn't feel on top of the world but I had a few moments where life was bearable. I'll stay on the med since it doesn't seem to be hurting but overall I feel about the same as before I started. :,(

0

Share this post


Link to post
Share on other sites

I think you need to be patient and stick to a well though out regimen. Are you doing this in collaboration with your doctor? It takes time for the effect of these drugs to stabilize. Until then perhaps better not to focus too much on how you feel day to day. Except of course if the side effects are too severe.

0

Share this post


Link to post
Share on other sites

So I guess I'm coming up on the one month mark for my Keppra trial! How exciting. I had not realized it had been that long.

 

I want to thank you hippoppd. I was definitely hyper-focusing. I have a habit of doing that when Im feeling super bad.

 

I've worked my way up to 1500 mg a day over the last few weeks. It was actually very easy to titrate up and i experienced little to no side effects (some diarrhea, slight cognitive disfunction at times (but at other times increased name recall.)) It seems when i titrate up i feel VERY good for a few days, and then that effect diminishes somewhat but i do not return to the baseline of where i was before titration. 

 

Haven't noticed much of an effect on my visuals to be honest. But i am not paying much attention to them either. Too busy at college haha

 

Speaking of which, I have been more pro social than i have in 5 years. Maybe more even (since a head injury 10 years ago). I find myself wanting to socialize and create connections. It's truly beautiful to have that part of me back. For the first time in years I have hope that maybe, just maybe, I'll be coming out of this thing alive. 

 

 

Pros: 

1) Decrease in DP

2) Decrease in DR

3) Decrease in depression

4) Decrease in anxiety

5) less sensitive to chemicals. I can now take supplements such as Gingko with positive effects instead of negative ones like before.

6) Pro social behavior

7) Increased academic drive

8) Severely reduced physical pain/fibro symptoms

9) a feeling of kinship with my fellow man

10) I feel able to empathize with people better. Sometimes the difficulties of my friends make me cry now. Before, I was so consumed with the intensity of my feelings that other peoples problems (breaking up with a girlfriend, failed exam, etc) seemed very small and hard to relate to. It's not that i didnt care about them... just it was hard to put myself in their shoes. Now i have a fuller spectrum of emotion-- good and bad.

 

All of these changes are significant. I don't like putting percentages on things but i feel several times better in all categories. 

 

Cons:

1) Intermittent mild brain fog. Not always unpleasant just a little sluggish. I dont know if this is just a sympton or my old brain fog coming through. I suspect a combination. My memory is definetely affected, however my increased vigalence has made up for any shortcomings in my interactions with people and academic carreer.

2) occasional nausea

3) diarrhea (no cramps though. its not very disconcerting)

4) chills, seems to be remedied by taking b6

5) now that i care about being social, I can feel lonely in a way that wasnt possible before. A problem i welcome to be honest.

 

 

I'm sure Im forgetting things... but the gist of it is this medication has saved my life and given me a second chance. I still have bad days, but i have great days too.

 

I strongly encourage anyone at the end of their rope to give this a try. 

 

Much love to you all and thank you for you're responses. They were very helpful and if there is anything I can do-- answer questions or help in any way--- please let me know <3

0

Share this post


Link to post
Share on other sites

I am a little worried though that now that I've stopped titrating up I'll start feeling bad again. I did go up very fast and noticed it diminishes after a few days. Last two days have been a little rough :x a few panic attacks and depression.

I'll just have to wait and see I guess.

Also, I've noticed it's hard to speak. Apparently that's common with keppra though.

0

Share this post


Link to post
Share on other sites

Good to hear you've been doing better. There's gonna be up and downs. Try sticking with it for a few months on a stable dose and evaluate with your doc.

Im going into the fifth week of a Lamictal trial myself. Been upping 25-50-100 mg every two weeks. So far so good, although with some minor side effects. Its not a miracle cure, but it sure seems to make me a lot more stable. Will be writing up a report when the time is right.

All the best and glad to be of help!

Sincerely,

hippo

1

Share this post


Link to post
Share on other sites

After discontinuing Keppra in November I decided to give it another shot. I stopped before due to a bad reaction to Ritalin which seemed to change some brain functioning and caused the Keppra to make me very physically anxious. 

 

So far far so good. Took 500mg today. It's been cutting down on the panic a lotttt but the depression less so. I'm also reacting differently to it this time. Less euphoria like I had before when I was titrating up. But my brain is very different than it was last time so we'll see how this goes. No physical anxiety from it.

 

today it made me pretty sedated for a bit. Felt a bit drunk tbh. However during the day I swam in the ocean and built a sand sculpture--two things I wouldn't do normally. Good signs.

 

Some decrease in libido but that's normal.

 

 

0

Share this post


Link to post
Share on other sites

Update:

had a few days where I was extremely depressed and tearful. This abated somewhat. Still have periods of depression. 

 

Sleep is weird. Sometimes I sleep better sometimes normal. Last few days I've been napping without as many negative emotional episodes upon waking (normally have panic and sadness).

 

Hair is shedding rapidly. Strands all over my house, sink, shower.

 

Anxiety has improved a lot. I'm depressed but I feel more sane. 

 

At 750 mg a day divided into three doses

 

Considering about going down to 500 to see if the depression lifts a bit. Maybe I'll shed less. 

 

Considering zinc and selenium supplementation to combat hair loss. 

0

Share this post


Link to post
Share on other sites

Hahah in many ways yes. That speaks to the horror that is hppd when it's very acute. You'll put up with a lot to feel a bit more sane/less anxious. 

0

Share this post


Link to post
Share on other sites

Also since I have PAWS from Ativan and gabapentin I have no idea if some of these symptoms are just from that and will get better over time. I believe the Keppra is making the depression worse but inimagine it will get better as my GABA system heals and recouples or whatever. 

0

Share this post


Link to post
Share on other sites
On 7/13/2017 at 5:02 PM, Onemorestep said:

Hahah in many ways yes. That speaks to the horror that is hppd when it's very acute. You'll put up with a lot to feel a bit more sane/less anxious. 

Yeah I know what you mean. I've done almost everything except keppra. Didnt want to take that plunge just yet.

Is there anything going on in your life that could be contributing to the depression?

Edited by TheMythos
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now